Monday, July 4, 2011

Adventures in Lyme and the Art of Exhaustion.

I haven’t posted a blog entry for quite awhile and figured it was about time I kicked myself in the ass and posted something.

With May being Lyme Disease Awareness Month I was quite busy. At the beginning of the month much of my time and energy was spent putting together educational displays for local libraries. I managed to complete three and have since received a request for another display to be made and interest in future educational exhibitions at more libraries has been mentioned.

May also marked the first meeting of my support group, Lyme Alliance of the Berkshires, with our first ever meeting occurring on the 19th. It was very successful and a big boost to my confidence to see the project grow from a simple idea to a reality. I was overjoyed to finally have an outlet to express my frustrations with Lyme, as I’m sure my family needs a break from time to time.

On the 14th Letters for Lyme officially launched it’s second successful letter-writing campaign, Physician Awareness!, with over 100 participants via Facebook alone. I managed to send out around ten letters myself, but have yet to hear back from anyone.

On the 17th I was able to attend a public forum about Lyme, a first for the Berkshires and shockingly sponsored by a local hospital. I was able to hear local Lyme-Literate physicians discuss their approaches to treatment and their thoughts on the Chronic Lyme controversy, one of whom I have since made an appointment with.

I was also able to meet a number of other patients, many from the immediate area. It was very uplifting to not only know, but also see in person, that I am not alone in this fight. My neighbors and fellow community members are fighting this disease right there beside me.

I had originally planned to attend the MAYDAY! Rally for Lyme Patient Rights on the 21st in Washington D.C. but was unable to due to health issues and cost. I was very proud to see the results of everyone’s hard work and I look forward to attending in 2012. Thank you to all of the organizers and volunteers, you are all angels in disguise.

Along with what everything I was already doing for Lyme Disease Awareness Month, a massive amount of networking and 1-on-1 public education also took place. With a combination of awareness projects and extensive advertising for the Lyme Alliance of the Berkshires I was able to reach out to many people from the local community and come together with other local Lyme advocates who are also working diligently to make Berkshire residents more aware about the tick-borne infectious diseases.

While I have always understood that Lyme disease is major epidemic, it was until I truly I began reaching out to the local community that the reality of the “epidemic” hit me. Nearly every single day I was meeting sufferers of Chronic Lyme or someone who had a friend of loved one battling the disease. I also met many who believe they may be infected.

It’s truly frightening how widespread Lyme Disease really is, I couldn’t have fathomed it being so close to home when I was first diagnosed but have since learned how poorly we have been educated, lulled into a false sense of security by a misinformed and greedy medical establishment. When presented with all of the facts and how the medical and science communities have responded to such information I feel sick to my stomach.

How could this be happening? How could a tick-borne illness have become so violently politicized to the point where the patients have been forgotten and instead replaced with dollar signs? Is this really the “American Way”?

Much of June was spent dealing the consequences of overextending myself during Awareness month. A good amount of time was spent in bed with more than a week and a half where I was nearly incapacitated 24/7, awake only six to eight hours a day.

My symptoms also began to cycle more quickly in June. Whether this has been due to the increase in temperature or is simply further proof of the unpredictable nature of Lyme, I don’t know.

Starting earlier in the spring I began to notice increased cognitive deficits and this has really come to head as of late. I am beginning to forget things more and more and my ability to function without some type of guidance has become more pronounced.

Last year I was still able to cook my own food and put together a nice meal for family gatherings. Now even toast has become too large of an energy expenditure. I rely entirely on my family to make my meals and encourage me to do more than just sleep.

Regardless of all the obstacles that stand before me I am have refused to allow myself to be held captive by my body. I have continued to work on various projects and persevere against the odds. Allowing myself some sense of normality is just as important as finding proper treatment. One needs a hunger for life if they are to remain happy and able to battle on.

While fear may permeate some moments of my day, when the unknown closes in and I wonder whether I will ever be “healthy” again, I always look to the good things in my life, the reasons to keep fighting this war and to always strive for victory.